Exercise Beliefs and Behaviours of Individuals with Joint Hypermobility Syndrome/ Ehlers Danlos Syndrome-Hypermobility Type

Jane Simmonds, Anthony Herbland, Alan Hakim, Nelly Ninis, William Lever, Qasim Aziz, Melinda Cairns

Research output: Contribution to journalArticlepeer-review

11 Citations (Scopus)
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Abstract

Purpose: To explore exercise beliefs and behaviours of individuals with Joint Hypermobility syndrome/Ehlers–Danlos syndrome – hypermobility type and to explore patient experiences of physiotherapy.Methods: A cross sectional questionnaire survey design was used to collect quantitative and qualitative data from adult members of the Hypermobility Syndromes Association and Ehlers–Danlos Syndrome Support UK. Descriptive and inferential statistics were used to analyse the data. Qualitative data was analysed thematically.Results: 946 questionnaires were returned and analysed. Participants who received exercise advice from a physiotherapist were 1.75 more likely to report high volumes of weekly exercise (odds ratio [OR] = 1.75, 95% confidence interval [CI] = 1.30–2.36, p < 0.001) than those with no advice. Participants who believed that exercise is important for long-term management were 2.76 times more likely to report a high volume of weekly exercise compared to the participants who did not hold this belief (OR = 2.76, 95% CI = 1.38–5.50, p = 0.004). Three themes emerged regarding experience of physiotherapy; physiotherapist as a partner, communication – knowledge, experience and safety.Conclusion: Pain, fatigue and fear are common barriers to exercise. Advice from a physiotherapist and beliefs about the benefits of exercise influenced the reported exercise behaviours of individuals with Ehlers–Danlos syndrome – hypermobility type in this survey.
Original languageEnglish
Number of pages11
JournalDisability and Rehabilitation
Early online date10 Nov 2017
DOIs
Publication statusE-pub ahead of print - 10 Nov 2017

Keywords

  • joint hypermobility syndrome
  • Ehlers-Danlos syndrome
  • hypermobility type
  • exercise beliefs
  • exercise behaviour
  • physiotherapy

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